One woman's quest for better health… living with lymphoedema

Tag Archives: Stem cells

These are two interesting articles from Toronto Physiotherapy written by Ryan Davey… Thanks for posting on LinkedIn so I was able to find them!! I am sure many would be interested in a medication that would help Lymphedema and also the research into why some experience weight gain with Lymphedema.. Always looking for articles that step into the future for Lymphedema and shine a light of hope on improvements to treatment.

Ryan Davey earned a PhD in Biomaterials and Biomedical Engineering at the University of Toronto, where he specialized in stem cells and regenerative medicine. While not writing and working with Toronto Physiotherapy, Ryan consults in the field of biotechnology.

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Anyone who has an illness or health issue, with no apparent cure, is very vulnerable to treatments such as stem cells that have not been proven and which could in fact be dangerous. Those of us with Lymphedema fall into that category. There is some confusion around this treatment and I was very glad to find this website which has clear easily understood explanations of what is happening with Stem Cells… Also how to identify medical centres promoting unproven treatments…although referring to Australia this information forms a basis for all other countries.

Unproven stem cell treatments are those where doctors offer to treat patients without first properly evaluating the proposed treatment, effectively circumventing the clinical trial process.

Unlike the careful pace of legitimate preclinical and clinical stem cell research (as explained above), the doctors offering unproven stem cell treatments are effectively selling hope with little or no medical or scientific evidence to back up their claims around both safety and actual benefit. These unproven, highly experimental treatments also are not cheap, with prices ranging from $9,000 to $60,000 per treatment, and patients are often encouraged to consider multiple treatments.

Having heard about stem cells and the promises that these cells may hold for regenerative medicine, for many Australians it is difficult to recognise that the treatment is unproven. Many of these services are promoted on very impressive websites, with persuasive patient and/or carer testimonials supporting the benefit of the treatment. However there are some simple points to consider which will help you to identify providers of unproven stem cell treatments…..

1 Scientific rationale is not made clear
2 Evidence of safety and efficacy in preclinical (animal) models is not provided or referenced
3 Treatment plan has not been peer-reviewed by an Ethics Committee
4 Payment is required
5 Benefit the practitioner (financially) and the patient (possibly)
6 Offered to patients who feel they have no other viable alternative
7 Offered by direct marketing (eg via the Internet) and often for a wide range of unrelated conditions
8 May be offered by doctors who are not experts in the condition being treated
9 May be performed at institutions with no track record of publications and research
10 Fully informed consent is often not obtained
11 Legal recourse if something goes wrong is often not clear
12 Medical insurance eligibility is often not clear
13 Limited or no long-term care or follow-up provided

For many years there has been concern about patients travelling overseas for unproven stem cell treatments that are not available here. Such travel is often referred to as stem cell tourism. However in recent years, there have been a growing number of Australian doctors and medical clinics offering unproven stem cell treatments here in Australia.

The fact that such treatments are being offered in Australia can make it more difficult to determine if the stem cell treatments are legitimate. Especially when the treatments use your cells.

Despite the exacting standards usually imposed by the Therapeutic Goods Administration (the TGA – which is the Australian regulator of all medical devices, drugs and biologicals), there is currently a controversial loophole in our Australian regulations. This means that unproven stem cell treatment is excluded from the regulatory framework provided the treatment is being offered by a registered Australian doctor, is using the patient’s own cells and is a one-patient treatment. It is not a requirement that such treatments have to be first proven safe and effective in clinical trials.
The treatments using the patient’s own cells are often marketed as having ‘no risks’ and are ‘natural’ because the cells come from you (ie are autologous). It is important for you to know that even treatments using your own cells can be dangerous. There have been reports of cells from fat growing into bone, as well as deaths reported overseas.

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This blog has the stories of mine and others journey with Lymphoedema, how, why and where! We are each different in how we came to have Lymphoedema, but what we have in common is stepping out into the darkness in search of surgery that may help or heal the Lymphoedema…. What we would love is to throw away the compression garments and say that’s it… No more!!!! However the journey is slow, filled with ups and downs, as the research and knowledge grows more progress is made but the waiting to see if nodes have grown, lymph vessels established takes time. My thoughts are that for legs more than one transfer is needed as it is a larger area than the arms, but only time will tell! For some it is a combination of LNT and liposuction or just the liposuction. Now we have a new area to monitor with the use of Stem Cells being added to the mix.. We await the progress of Val who is having Liposuction and stem cell therapy. I must add though at this stage there is no proof that the stem cell therapy works and it is very much experimental… Follow up needs to be done over a number of years with all these surgeries. Specialist Lymphoedema Liposuction (not cosmetic liposuction) reduces swelling but a compression garment needs to be worn 24/7 after surgery to stop the limb re swelling..

If you are new to this blog there is a great deal of information re surgery and self-care. If you would like to find a particular topic use the search button found by scrolling down the posts to the bottom.

Nothing in this blog replaces medical advice and I make no opinion on which surgery or procedure is better or worse!! I just wanted to bring together people’s experience from a personal, patient centred view-point. I hope to be able to follow those who have given their stories for a number of years to get a true picture of their progress. I would also love to share more posts about people’s personal experiences of either living with Lymphoedema or the surgeries that people have had.. My email is helenbrd@bigpond.net.au

If people wish to remain private I will not use real names, but the more we share the more we learn… Thanks for all the support, wonderful comments and just being there for me, the Internet is an amazing tool when stepping out alone.. I feel it is so important that we “Believe in Ourselves”… To those having surgery I wish you good luck … You know who you are…Be strong and heal well .. Helen

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Thanks Val for allowing us to share your journey via this blog… I will be following with interest the progress and results … Good luck on your surgery day…

I must note that this treatment is experimental and there have been no clinical trials nor results from previous patients other than they are still wearing compression… at the moment the results are the same as for liposuction.. Caution should be used with stem cells at this time as they are being offered with out the backing of results to show safety and results … The info in this booklet is very helpful in making decisions re stem cells and gives a better understanding of where this research is at… https://lymphnodetransplant.wordpress.com/2013/12/08/features-of-unproven-stem-cell-treatment/

My name is Valerie, I’m 52. I currently live in South Korea, with my wonderful husband and our two Cairn Terriers.

This blog aims to reflect my thoughts and opinions on receiving a different new treatment for a couple of medical conditions that are making my daily living much tougher. I hope this journey and collection of facts and thoughts will be helpful to other sufferers about this new treatment, but I am not a medical person, so they may be simplistic rather than medically correct or complete.

I am just an average human being, looking for a cure. If you are too, then – Welcome! I would be happy to share the journey of this experience with you, please feel free to ask if there’s anything you want to know about what happens over the new few months.

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

Feel free to share with others.. it can be distributed via social media, reblogged or added to websites.. please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog
https://lymphnodetransplant.wordpress.com/ Thanks